One More Week

Well, technically, only 4 more days, but we won't know anything for another week. On the 30th, we will celebrate one year of Max being off the cyclosporene. This will be a really big deal. If he doesnt' relapse within a year, I guess that his chance of relapse is much lower. (I know, I keep saying this.) I can't believe how much I am concentrating on this date. How much I worry about it. I will feel so much better on Friday after he has had his blood test. This is going to be a long, long week. I was starting to worry about it as early as last Monday. I was considering calling to see if they could get us in on Monday instead, but then the kids both got sick, and Max even got a fever, and not only do I not like to take sick kids into a place with a bunch of kids on chemo with shot immune systems, but I would rather his body has a little more time to recover, so I left it for Friday. I can tell I am already worrying, though. It isn't a conscious thing, more of a feeling of low grade, in the back of my mind stress. I am sure it will be fine, but it doesn't make it easier. Friday can not come too soon for me.

That's What He Thought?

Last night, there was a mosquito in Max's room (the first of many, I am afraid). Max was pretty concerned about it, because he didn't want it "eating my blood" so I killed it before tucking him in. This led to him asking why mosquitoes and ticks "eat people's blood" (I really didn't have a good answer for this), what they drank, why they had the same thing for breakfast, lunch, dinner, snack, and dessert, and other lovely nighttime conversations. Then, he asked me why sometimes he gave his blood to other kids and why sometimes other kids gave their blood to him. It took me a minute for this to sink in. All this time, he has thought that when they did blood draws, we were taking his blood away to give it to other kids. I explained to him that the blood was put under a microscope and looked at to make sure it was healthy, and so that the doctors could count to make sure he had enough of the different kind of blood for him to be safe and healthy. I told him that daddy and I did sometimes go and donate our blood, but that we are bigger and have more blood and we do it by our own choice. That people can decide to donate their blood to help people who need blood because their body isn't working right or because they were in an accident or something happened where they needed extra blood. I told him that if he ever wanted to give his blood for other people to use, that he would need to be bigger to do that, and that we would never, ever do it without his permission. He seemed happy with this answer.

I never had a clue that he felt this way. I wonder what else he thinks that I haven't discovered yet.

How Things Change

I ran into someone from Miss Ellen's class and Playgroup today. I used to see her regularly before Max got sick. Her daughter is a bit younger than Max. She is an oncology nurse at Children's Boston. When I first heard what she did, I thought that it sounded like a terribly depressing place to work. I couldn't imagine doing it. But, now that I have spent so much time in a pedi hem/onc department, I realize that it really is the opposite. Yes, children die, and that is awful and I still do not know that I could deal with that over the long term, but, at least at MGH (and she said the same about Children's), it is an amazingly upbeat place. Kids who are obviously very ill often seem so strong and upbeat. The doctors and nurses are wonderful, but it is really the kids that amaze me and so often make me smile there. Kids just amaze me.

CBC - 03/28/2008

Another month has passed already, if you can believe it. It snowed this morning, much to my great dismay, but we managed to drive in and spent a short time at the Museum of Science before Max's apppointment today. All three of us really enjoy it. I wish we had had more time.

Max's white count was down a bit, but Dr. Ebb is pretty sure it is just the result of a virus that he had a couple of weeks ago. He had some atypical lymphocytes, which Dr. Ebb pointed out to me, therebye freaking me out, but in hindsight, I am pretty sure he was showing them to me to show me that his body was just fighting something and that his bone marrow is working right. Poor Dr. Ebb. He spent a fairly large amount of time trying to convince me that everything is fine and there is nothing to worry about. He is right, though, I am sure. I would have given anything for results like these 6 months ago. It is funny how your "needs" change so quickly.

Max and Lauren had a lovely time at the hospital, and there was a volunteer named Lauren who played with our Lauren during Max's exam. So, she didn't have a chance to demand a full physical today. :)

Here are the numbers. We go back the first week in May. Then, if those numbers are good, we start going every two months.

WBC: 4.3
HCT: 35.2
HGB: 12.8
PLT: 166
ANC: 1510

Just because Dr. Ebb pointed them out, Atyps: 3

I don't think I had really focussed on just how good the HCT and HGB were. Those are really good numbers. :)

Max's First Book

Max decided he wanted to write a book this evening. He even knew what it would be called: The Two Lobsters. He asked Josh to get some paper, had me getting him some markers, and sat down with Josh and dictated it to him. He had Josh draw the first picture, but then, after some encouragement, illustrated the rest himself (though he did have me add a picture after the fact. Just for the record, Josh draws a much better lobster than I do.). After we were done, I bound the book for him using his hole punch (thanks, Miss Ellen) and some string. He wants to take it to school and put it in the bookcase for all the kids to read.

Here is the story.
One lobster was all alone and it had no friends to play with.
Then, one lobster scurried by. The first lobster who was all alone saw the other lobster scurry by.

(Max has requested that I include the picture that I drew, even though there is no text to go along with it. So, per his request, it is in here. I was supposed to draw a big lobster and a little one. After I drew the second one, he said "Well, that's more medium, but it is okay.")


Then, the two lobsters married and then they came together forever.

CBC-02/29/2008

Max had his monthly CBC today. The results were wonderful. Dr. Ebb even seemed surprised by them. (Oh, and I did confirm that last month, he chased us down to give us the good news.) His platelets were just shy of 198. All his counts were great. I checked on last months' retic count, too, and it was 1.7. He didn't ask for one this month as things have been so good. We have two more months of monthly tests and then should be able to move to bimonthly, which I am sure both Max and I will prefer.

Max did great with the blood draw. He told me he didn't think we should get a blood draw but should do something else instead this morning, and expressed some displeasure when I put the Emla on (he said it hurt, and I know that it did not), and he told me he was scared when she did the draw, but he sat still and didn't even cry. As soon as it was over, he went back to playing. Lauren came in with us and she was her usually silly self. IT was a nice visit.

I really struggled this week. I keep wondering when I will stop worrying so much. The closer to the draw we get, the more I worry, I think. It took me a few days to figure out what was bothering me, because it is really subconcious, but the worry is definitely there. I was not very pleasant to be around today. We didn't even do anything before the appointment because I just wasn't up to it. I hope that I will be able to learn to stop worrying. It is exhausting.

Anyway, here is the wonderful news:

WBC: 8.9
HCT: 36.6
HGB: 13.5
PLT: 198 (With a happy note on the lab sheet saying New normal range :) )
ANC: >4500

Mom's Need to Talk in Specifics

We got yet another snowstorm on Friday. It snowed all day, and we woke to a winter wonderland. Josh was outside, and Max wanted to join him. I told him he needed to put on pants, shoes, a hat, and a jacket before he could go outside, and went back to working, only half paying attention as he headed out into the backyard. I glanced out to see him wearing this. I am pretty sure that Cisco thought he was nuts, too.

And yes, after I took the picture, I went inside to get him a pair of boots, though I couldn't talk him into a warmer jacket or hat. It didn't take him long to figure out that Crocs are not snow walking shoes.

Aquarium Adventure

We went to the New England Aquarium today. I have wanted to go there with Max since before we moved back here. As a girl, some of my fondest memories are of walking down to the aquarium with my father and brother and watching the seals play. When we were really lucky, Dad would let us go in and see the big tank and the rest of the aquarium. This started my love of the ocean and its creatures, and I have dreamed of sharing it with Max since pretty much he was conceived. Josh, Greg (my brother) and I visited the Baltimore aquarium when Max was around 9 months old, and he had fun, but he doesn't remember that. Somehow, we never managed to get to the Monterey aquarium with our kids, even though we went many times before they arrived in our lives.

Max loved it. Josh took the day off specifically so that we could make this visit and having him along allowed Max to go see what he wanted to see while Lauren and I hung back at times. He was fascinated by the big tank and the fish in it, thought that the penguins were really fun to watch, and loved the jellyfish exhibit. He took some time to build a structure out of plastic fish and learned about red belly turtles. He was cautious at the tide pool, as compared to his sister, who leaps before she thinks and was thrilled to be able to stick her hand into the water (in her defense, she did wait until I touched the sea star before she touched it). But, the thing he liked the best was watching the seals. Just like his mom. :) I promised him we would visit them again often, as I am slowly getting my bearings in Boston and am starting to figure out how easy it is to walk (and or take the T) from one thing to another like we did when I was a child. Now, we just need spring to arrive.

On our way out, I realized we were driving by the North End, so we turned onto Hanover Street and amazingly enough found parking and stopped to have a slice of pizza ("Mom, thanks for chosing a perfect lunch place") and then headed to Maria's, our favorite pastry place, for cannolli. It was a wonderful day. I know we won't be able to do this too often as an entire family, but I hope to get to do it again sometime fairly soon.

We head back into Boston in two weeks for Max's next blood draw (Dr. Ebb is on vacation next week) and I hope to take the kids to the Museum of Science beforehand again. I think we all are enjoying being able to get out and do things this year. It has been good for all of us.

A Busy Day, A Happy Day

We just got home from a very busy day. Max had his monthly appointment. It was actually supposed to be last week, but I had double booked him for an appointment with Dr. Ebb and also with his pediatrician, and believe it or not, it is harder to get an appointment with his pediatrician, so I changed the Clinic visit. This is a pretty big deal for me as usually I am very anxious for his blood test. I have to admit that I got anxious coming up to this day, especially because he has a cold, but it was a great appointment. We started the day with a trip to the Museum of Science. I had these grand plans of parking at MGH and walking over to the Museum, but it was bitterly cold, so we just drove to both. It was a great combination. The kids love the museum and so do I. It is so nice to be able to go there. We managed to time it really well, too. Dr. Ebb said Max looked great, despite his cold. He said that in a couple more months, we can move to every two months. We left right after the blood draw, which Max tolerated much better than last month. He didn't exactly jump with joy, but he didn't kick and scream this time. I think a few more times and he will be accustomed to the draw in his arm again. We went to the caf to buy pizza on our way out the door and as we were getting into the elevator, Dr. Ebb ran up and handed me the results. I am pretty sure he came to find us before we left as that was all he had in his hands. The results were better than I could have ever imagined. I actually expected to see a dip because of the cold, but his platelets were 176, a number I never expected to see. All of his counts were in the normal range. I am so happy.

WBC: 7.9
HCT:35.5
HGB:13.1
PLT: 176
ANC: 4100

They ran a retic count, but I don't have the results for that yet. It is possible that Dr. Ebb will call me with that tonight, but I didnt' specifically ask him to, so I am not going to expect it.

We go back at the end of Feb. I am going to try to combine the museum and hospital again. I am really worn out, but it was fun, plus it was nice for it to be something other than just a trip to get a blood draw. It made it something to look forward to.

Max's First Day of School

Or maybe I should say Max's 5th day of school. For me, this was a huge deal. He finally got to go back to school after all this time. For Max, it was more of a "well, it's about time" thing. I forgot the camera, so I couldn't get a picture, but honestly, there would have been nothing to take except for a picture of his back and he trotted off to the classroom. It was like he had never left. As we were driving in, he asked if I had remembered his lunch box. I told him that I hadn't signed him up for Lunch Bunch yet because I wanted him to have some time to get used to going. He told me he had already done that. The only bad point was when we were heading home. He told me that he hadn't done everything that he wanted to do yet. I tried to convince him that he was going back tomorrow, but I think he doesn't quite believe me. His teacher said that he had a great first day.

The weather is beautiful today, sunny and in the high 50s. They played outside a lot more than they normally would. I like that The Red Balloon is flexible like that. While he was there, Lauren and I met a friend and her younger daughter for coffee (her older daughter was also at preschool). It all felt so normal. I probably should have gotten so work done instead, but it was a really nice break.

I thought I would have issues with him being gone, but I think this is going to be a very good thing. We still have two days a week to go to the museum etc. It seems like a great balance.

I still can't believe he finally gets to go back.

Max and Mom's Special Day Out

Today, we did something that I have wanted to do for a very long time. Max and I took the train into Boston. He has been asking to ride the train for quite a while, especially whenever I have gone off to ride it without him. For the longest time, we just were not going to risk having him on the train. The last couple of months, I felt comfortable having him ride it, but I don't think I could handle being alone on the train with him and Lauren (or, for that matter, with just Lauren), so we haven't done it. However, our favorite sitter is home for vacation, so she watched Lauren for us. Grandma was coming into the city (Grampa Rich stayed home sick :( ) so we took the train in and met her. Then we walked through frigid Boston (it was in the single digits and the wind had it well below zero) to the North End and went out for lunch. Max had pizza, I had pasta, and Grandma had a lovely sandwich. After lunch, we made our way to Maria's for dessert. We love Marias. Max got to pick out a couple of cookies, just like I remember doing as a child. I used to love the green and pink and yellow cookies in the Italian shops. Max enjoyed them as much as I did. He also insisted that he bring some home for Lauren. Grandma and I had espresso and canolli. We walked rapidly back to the train station (into the wind this time. Even Grandma stopped trying to tell us it wasn't really all that cold.), and rode the train home. Max had a lovely time and said he would like to go again, next time with Grampa Richard. He also said he missed Lauren, but was "glad we didn't bring her because she would have gotten into a lot of trouble on this train." Smart boy, our Max.

Happy Holidays

What a lovely time of year this has been for us this year. The kids are loving the snow, especially Max, Christmas meant that Grandma and Grampa Rich and Uncle Greg and his friend Jenni came to visit. Max loves Uncle Greg and Grampa Rich. Grandma rates, too, but not as highly as those two. Poor Grandma. Max was really into Santa this year and lights and the tree and of course presents. He was so excited about the presents under the tree that he could barely contain himself Christmas morning. When the dust settled, what were the favorite gifts? A cool parachute toy from Aunt Kristin, and a box of Spiderman Bandaids that Santa left in his stocking. They are much more fun than the ones that Mom buys. He is also pretty fond of the Firefighter Rainjacket that he can wear with his Firehat that he got at the hospital the last time we were there.

It was such a relaxing holiday period this year and we are looking forward to a healthy and happy 2008. Max starts school on the 8th. He can't wait. He got a new backpack and lunch box for the occasion. I am a bit nervous, but I am sure I will get over it. Another new phase in our lives.

Happy New Year everyone.

WBC - 12/19/07

We went to MGH for the monthly blood draw and exam. Max and Lauren were in good humor, and Lauren charmed the heck out of the place while Max got her exam (yes, she did once again demand an exam, too. I think she would have tried to get the nurse to do a blood draw if the volunteer hadn't taken her for a walk then.) Dr. Ebb said Max looked great. He is getting tall, 43 inches or so now. He was not at all cooperative for the exam, though. I am not sure why, but I hope this is not a sign of things to come. He just wanted to cling to me and not let Dr. Ebb look at anything. He was giggling while he was doing it, but he was definitely being stubborn. He also was really, really unhappy about the blood draw. He said it was scary to have it done in his arm and he cried during it, but he stayed still, which is the most important thing. I tried to tell him that he did very well, but he said that no, he didn't, because he cried. We will have to work on this. It is okay if he cries as long as he lets it happen.

His counts were very good. The WBC was a bit lower than I like, but the rest were great. Got to love that red count. They did a retic count today (baby red cells) and it was a number that you would expect to see for a person whose count is where Max's is. I am pleased. We go back in a month.

Oh, bonus, the music therapist was there, and Max got to play with her a bit. She is just wonderful. And, the kids got fireman hats. Who could ask for more. :)

WBC: 5.0
HCT: 37.5
HGB: 13.6
PLT: 139
ANC: 3380 (9 monos)
Retic count: 1.6

A Boy and His Dog

Max has recovered beautifully from surgery. He had some discomfort the first couple of days, but a little Tylenol seemed to take care of that. They gave us a prescription for Tylenol with Codiene but we didn't even end up filling it. He has been running around like crazy the last handful of days, helping cut down a Christmas tree (see our family blog for pictures), putting the ornaments up, building a snowman in our first real snowstorm, and visiting a local museum. He rarely naps anymore, but occasionally, he will take one, and yesterday, after the museum, he went down for the count. He slept through me bringing him inside and moving him to the chair, and didn't even notice when Cisco snuck up next to him. I let them both stay up there, even though Cisco isn't supposed to be up there (and he knows it. Just look at that face).

The Port is Out

Today, Max had his port removed. What a wonderful day. The doctor feels confident enough that Max won't need more transfusions any times soon. It really feels like the end of a very, very long year. Even Max was happy about it. When we walked in to the recovery area, Max's first words to us were "Mommy and Daddy! It's gone!" I have been trying not to make a big deal about the surgery, because I know he doesn't like anesthesia, but I did want to prepare him to have it taken out, because he had grown rather fond of it. I am glad that I did that. Plus, when the head nurse asked him if he knew what they were doing today, he knew the answer.

Everything went as well as it could have, though we did have a rough start this morning. Josh's alarm didn't' go off and I woke with a migraine. We left the house 45 minutes later than my absolute latest to get there on time time. We were supposed to be at pedi hem/onc at 9 for a blood draw and over to the same day surgical unit by 9:45. We didn't arrive at the hospital until 9:40. So, I send Josh and Max up to pedi hem/onc and I went over to surgery to get the paperwork started. It worked out pretty well. Amazingly enough, surgery was actually running ahead of schedule. They were ready for him to get gowned up before he even got there. I only sat for maybe 5 minutes. Last time, it was a good hour. Everyone was very nice as always, and Max was in great spirit, especially because they allowed him to pick a toy from the treasure box at the clinic. He got a big, stuffed superman, which I think was pretty appropriate for today. We had the same prep nurse as we had last year. What a difference it was from last year, though. First of all, the gown jammies that were huge on him last year were way too small for him. He had bright red cheeks and lips, instead of being so pale. We were all in good spirits. The clinic left his port accessed which was wonderful because they were able to administer the original anesthesia through the port instead of using the mask. Max hates the mask. He was very relieved when he was told he didn't need to use it. They inserted an IV under anesthesia.

Max didn't exactly relax before they put him under, instead preferring to look at everything, and we couldn't get him to lie down, so I held him when they put him under, and gently lay him down after he fell asleep. It was peaceful. Then, Josh and I left the room and I went downstairs and got a flu shot (handy, as I was supposed to get one anyway. Max is still considered at high risk, so the whole family needed to get vaccinated again this year. Of course, I had made sure Josh and Lauren were done, but not myself) and grabbed a bite to eat, while Josh stayed upstairs. It was supposed to be a very short surgery, so we didn't want to go too far, and Max likes Daddy when he wakes from surgery, so Josh stayed. I ran into Reverend Ann when I was going to the cafe, and was able to tell her how much her company and counsel had meant to me when Max was hospitalized. It was so nice to see her again. Then, I went back upstairs just in time to see the surgeon, who said the surgery went very well. Then, we waited about an hour as Max slept off the anesthesia. He was due a nap, anyway. He woke up in good humor, though glad to see Dad. Josh held him for a while as he drank some juice and ate some crackers. He was anxious to go home, so as soon as we could, we got him dressed, put him in a carrier on my back to avoid any falling down (the nurses were amazed that I could carry him like that, and in awe of my lovely Buckle Tie.. note in the picture how happy mommy is and how drowsy Max looks. :)), and headed to the car. He chatted the whole way. Honestly, if you hadn't' know it or noticed the bandaid on his hand, you would never have known that he had anything done today.

We bought Max a special movie (Backyardigans Super Secret Superspy) and let him eat a "pie lunch" when we got home, and he is relaxing on the comfy chair. He says he hurts a little bit, but not enough to complain about it. I think I am whining more about my achy shot arm. He is such an amazing boy.

Oh, the icing on the cake? Max's lab numbers. His WBC was down slightly from last time, but still in a comfortable range, and his platelets were higher than they have been since this whole thing started.

We go back in two weeks for a follow-up. We are going to take it easy the next few days, if I can convince Max to do so, at least. Hopefully, he will heal quickly.

Labs:
WBC: 5.3
HCT: 35.8
HGB: 13.1
PLT: 147
ANC: >1900 (they didn't do the math for me, so I don't know the exact number. There were a bunch of Neuts and some monos. :) )

A Day to Give Thanks

What a lovely Thanksgiving we had this year. It is still so hard not to look back on how things were last year. Last year, we almost didn't get to go to my father's house for Thanksgiving because Max was getting regular transfusions and they were unsure that they wanted him going that far. We were able to go because his didn't need a platelet transfusion until the day before Thanksgiving (this was actually the first sign that things were getting better, I think) but his ANC was scarily low. We had a lovely visit, but were unable to do anything else, and I spent the whole weekend worrying about exposing him to illness. This year was exactly the opposite. Ironically, Lauren caught a cold and we didn't end up travelling in order to not expose my father and stepmother to Lauren's cold. I pulled together a quick meal and we spent the day together. It was so relaxed and lovely. Max looks great and loved spending the time with Josh. The weather was warm and foggy, and we all went to the Cranberry Bogs for a walk. For some reason, Max decided he wanted to ride on Josh's back for a while and he and Josh got to take pictures and look at things and talk together. It was colder today but we had another nice outing. It has been a lovely holiday.

Max's Wish

By the nature of Max's diagnosis (a child with a potentially life threatening disease), Max was a Make a Wish candidate. Back in June, Make a Wish volunteers came out and met with him and asked him to make a wish. He wished for a soccer ball for his daddy. That is what happens when you ask a 3 year old questions like that. :) However, after many attempts, they finally asked him if he wanted to go on a trip anywhere. He replied that he was going on a trip. They asked where. He said to the place with the big pool and the beach where he made sandcastles with Uncle Greg. They asked him when. He said "right after you leave. Mommy is going to take me. We have to take an airplane." It was about 7PM at the time. Again, got to love the mind of a 3YO. However, they marked it as a wish and asked what he was referring to. I told them of our trip last year to the Bahamas and they worked on a wish. They suggested the Beaches resort in Turks and Caicos and we thought that sounded like a great place for him (and yes, for us as well). We left on Nov 1st for 5 days and had the time of our lives. Max was in his element and there really couldn't have been a better place for him. He started his day around 5:30 by getting me up and helping me make coffee. Then, he and I would sit on the deck while he read or played with playdough and I would knit and drink my coffee and we waited for the waterfall to turn on and the day to start. It was very peaceful. Then, we would head off for breakfast (fruit, fruit, pancakes, fruit, bacon and sausage, freshly squeezed OJ, and more fruit), and return to our room to get ready for a day of water fun. Max loved the pools and we visited each of them. He also enjoyed the beach and building sandcastles. It was hard to get him to break for lunch or dinner. By the end of the day, both kids (and parents for that matter) were worn out so we usually went to bed early. He was very sad to leave.

Thank you so much Make a Wish. It was a great experience.

Sibling Stories

I was going to post this on our family blog, but I decided it really makes sense for it to be on Max's, as it is very much related to everything we have gone through as a family in the last year plus.

I went to the hospital with both Lauren and Max yesterday. Lauren needed a hip xray as they have been keeping an eye on her right hip. She was diagnosed with hip dysplasia around 6 weeks old, and had regular ultrasounds for the first six months, but by then, it appeared to be growing normally, so they have never had to do anything with it. We went through a lot of stuff like this with Lauren. Holes in her heart, hypertonic, the hip, diagnosed failure to thrive. Everthing resolved itself on its own. I still remember expecting Max's issues to resolve on their own, too, because things had for her. Oh well. Anyway, Lauren has always been a very good patient, but because of all the time Max has spent in the hospital, he plays a lot of doctor/patient games. He has a real stethascope and thermometer and a lot of play medical stuff. He practices on his stuffed animals, toys, mom and dad, and of course, little sister. Lauren plays along very well, and is a great patient for him. (See this blog entry from our family blog) She also likes to be the doctor. Well, when we went up to Max's appointment yesterday, she knew just what to do. First of all, she was amazing during her x-ray. She just lay quietly and completely still for it. This is pretty good for a 2YO who never stays still. Then, when we were seeing Max's doctor, after he got his height check, she insisted that they check her height too. After Max's blood pressure check, she hopped up in the chair and loudly announced "My turn!!" pointing to the blood pressure machine. Max didn't think this was a good idea, but the tech was nice enough to take her blood pressure. Then, because I wanted to know (she hasn't been checked in 6 months), she got weighed. After Dr. Ebb checked Max all over, she lifted up her dress, pointed to her belly, and said "Me first belly!" until he listened to her. Then, she turned around and did the same thing saying "Now, back!!" Poor Dr. Ebb ended up basically doing a full exam on her, too. We couldn't help but laugh. Then he said "I bet she has everyone wrapped around her finger." Which is often pretty true. :)

I often am often very thankful that she is so young. To her, this is all normal stuff. I do not think she realizes how much attention (good and bad) Max has gotten because he has been sick. It really has been the year of Max. Sometimes, it seems like she is the forgotten child. She has been basically dumped at practical stranger's (to her) houses when we have had to rush to the hospital, people who know every detail about Max do not even realize we have a second child, we cancelled her first birthday party because Max was hospitalized, and barely had a second one because we wanted to make sure he was healthy. When we did plan it, we had people tell us that the only reason they went to Max's was because he was sick, and that they were not going to go to two kids birthday parties in one year. She didn't go trick-or-treating last year because of Max. But, we are lucky. She is young and doesn't see the difference. I can only imagine how hard it is for older siblings of children will illnesses like Max's. I completely understand why the hematology/oncology department has programs for siblings of sick children. It must really take a toll on some of them. We have been so lucky with Max's recovery. Many people go through much more. Instead of having a child who feels that she is missing out on things, we have a completely secure and independant child who is probably a bit too trusting of strangers, but other than that, is just easy going. Once again, I count my blessings.

Another Good Day - CBC 10/29/2007

I am utterly exhausted, having spent much of the day driving to Boston, taking Lauren for a hip x-ray (looked great) and then Max up to pedi hem/onc, but I wanted to write so that people could hear the wonderful news. Max's counts were very good yet again, and they are scheduling the port removal for some time in November. Dr. Ebb was really pleased. He gave him the okay to start preschool and to do "anything he wants to do." I think we will go to the Science Museum as soon as we get back from Turks and Caicos. :)

The kids were really great, considering that they each got dragged to the other's appointment. Lauren insisted that Dr. Ebb give her a full checkup, too, though. At least Max didn't insist on a hip x-ray.

Here are the numbers. The platelets were down a tiny bit, but the numbers fluxuate and in the whole scheme of things, they are basically stable.

WBC: 6.7!!!!
HCT: 35.8!
HBG: 13.1? (I don't have the paper here and am too tired to track it down)
PLT: 114
ANC: 3220!

His labs were so normal that there were only three flags this time (they mark if the numbers are high or low). Usually, pretty much the entire lab sheet is flagged. Amazing.

Wow! CBC - 10/03/2007

Max's numbers couldn't have been much better. I am thrilled, the doctor is thrilled, everyone is thrilled. He looks great, and the numbers matched how good he looks. Dr. Ebb still wants to wait until next month before starting school, though. No sense in risking things at this point. He will get checked again at the end of the Oct, just before the Make a Wish trip. Then, hopefully we will finally schedule the port removal. That is only day surgery, so it shouldn't be too bad.

If all goes well, this was the last time he will get the IV antibiotics. He could have just had oral meds this month, but because he was already accessed and the music therapist had told him she was coming to see him, I opted for the IV meds. He loved music therapy as usual. We also played some games, watched a movie, and did some art. He got to play with playdough with a little boy a bit younger than him, too. It was a nice visit.

Here they are. :)

WBC: 5.8
HCT: 35.0
HGB: 12.6
PLT: 127
ANC: 2240

I am pretty sure that the WBC, HCT, and HGB are all at the highest level we have seen.

May next month be as good.